Making progress: Eli is thriving after laryngeal cleft repair

Eli Bustard is pretty laid back for a 3-year-old — until he sees a picture of a dinosaur. “He’s obsessed,” laughs his mother, Nicole, who reports that Eli has been poring over a library book about these prehistoric beasts. Some of his other favorite pastimes: playing with trucks, caring for his Boston terrier and climbing up and down the musical stairs at Boston Children’s Hospital, which play a cheerful melody with every step.

A native of Bangor, Maine, Eli first came to Boston Children’s when he was just a few months old. Although he was born about three weeks early, he appeared to be in perfect health, and returned home with his parents after a typical two-day hospital stay. But concerns began to surface quickly. “He wasn’t eating well or gaining weight,” says Nicole. “We ended up visiting his pediatrician every day for a checkup.”

To Boston for expert care

By the end of the first week, Eli’s doctor was worried enough to recommend a trip to the local emergency department. There, clinicians prescribed medications to treat pneumonia and began feeding him through a nasogastric tube rather than by mouth. Yet he had to remain constantly propped up to prevent him from aspirating liquids. Six frustrating weeks passed on the pediatric floor and Eli wasn’t getting worse — but he wasn’t getting better, either.

Eventually, the Bustards were sent to a larger hospital in Maine, where Eli was diagnosed with a laryngeal cleft, an abnormal opening between the larynx and esophagus. As a result, food and liquid can pass into the lungs and trigger a number of eating and breathing difficulties. The cleft was a stage III — both more rare and more severe than what Eli’s doctors in Maine felt comfortable treating. They referred him to Dr. Reza Rahbar in the Center for Airway Disorders at Boston Children’s.

Fear, then relief

“We were still really scared when we arrived in Boston,” explains Nicole. “We had never heard of a laryngeal cleft and didn’t know what treatment would entail.” But soon, Nicole and her husband, Benjamin, began to relax. “Dr. Rahbar and his team were so calm and confident that we began to feel more comfortable,” she says. “Within just a few days, they already had formed a care plan for Eli.”

That plan involved feeding their little boy through a gastrostomy, or G-tube, in his stomach for six months until he was ready to undergo surgical repair of the cleft. The procedure was a success, and two months later, Eli was able to start on thickened liquids, a standard approach for a laryngeal cleft. Within a year, his G-tube was removed.

Hope for the future

Although Eli is still on thickened liquids and might require a second surgery at some point, his parents are hopeful that he’ll continue to make progress. “He hasn’t been really sick and he’s come so far already,” says Nicole. “He’s doing incredibly well.”

Meanwhile, the family returns to Boston a few times a year for checkups with Dr. Rahbar and the team — and for another jaunt up and down those musical stairs. “Eli actually loves coming to Boston Children’s,” says Nicole. “And we’ve been really pleased with his care.”